GSD3a interview and survey

Endpoint Outcomes are conducting two studies into GSD3 – an interview study and a research survey. The results will help to guide future research and trials. Both projects are sponsored by Ultragenyx Pharmaceutical. Read their fliers about how you can contribute and how to contact Endpoint Outcomes.

IMPROVING THE LIVES OF PEOPLE AFFECTED BY MUSCLE GLYCOGEN STORAGE DISEASE

PUBLICATIONS

 

IAMGSD has publications in English (a few other languages) to support people with McArdle disease, their families, schools, employers and doctors. 

COURSES

 

Learning management techniques on a walking course.

IAMGSD promotes walking courses to help people improve their condition. These have so far been held in the USA, UK and Germany, with more countries to be included in future. 

CAMPAIGNS
Our campaigns of activity and awareness raising.

IAMGSD campaigns for early diagnosis of McArdle’s and other mGSDs, the adoption of international standards of care and the provision of centres of expertise.

 

RESEARCH
Our research agenda for muscle GSD.

IAMGSD works to identify the needs of people affected by McArdle disease and other muscle GSDs, and to stimulate, encourage and support research efforts to meet these needs.

 

What is IamGSD?

We are a patient-led international group encouraging efforts by research and medical professionals, national support groups and individual patients worldwide.

What is Muscle GSD?

Human bodies make glucose from carbohydrates. Excess glucose is stored as glycogen in our muscles and liver. Muscle glycogen storage disease is when our muscles cannot convert their glycogen back into glucose to power our muscles.

Muscle GSDs links
If you have another muscle GSD please contact us.

Site updated: 10/2020.

© IamGSD 2017 – 2020.

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